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Treatment dilemma

BlessedinPNW
Posts: 14
Joined: Oct 2013

i have successfully completed 6 rounds of rchop for stage lV dlbcl nhl and am in remission.  My oncologist wants me to have radiation treatment to lessen the chance of reoccurrence.  I have a consultation with an oncology radiologist tomorrow and am wondring if anyone has suggestions as to what I should be asking during this meeting?  Has anyone had / or declined radiation treatment (or know of someone who has) and regretted the decision to do so?  It's my understanding that radiation treatment has greatly improved over the years and the exposure is less and more accurate.  I have seen posts on other boards about the long term effects but it seems like their treatment was many years ago.  I am trying to calm my fears and make an informed decision.  Sharing your experience / knowledge / concerns / advise regarding this would be greatly appreciated.  Many thanks.  Toni.

PS:  my brother found this support group and told me about it last night...wish I had found it 6 months ago when I was first diagnosed.  Don't get me wrong...my family and friends have been very supportive, but it would have been nice to talk to someone who really knows what you are going through. 

bobmcghee's picture
bobmcghee
Posts: 43
Joined: Apr 2010

Hi, glad to hear you made it thru r-chop.  I had radiation before chemo for b cell lymphoma that damaged two lumbar vertebrae. The radiation was limited to about a six inch square area that would hit the vertebrae. It was 18 times and done in back and in front each time. The only problem I had was after about 5 time my stomach got a bit queasy since the location of the lumbar vertebrae is pretty much where the stomach is too. I never took anything for my stomach because it wasn't that bad. There was some skin soreness that they gave me some cream to apply. The worst visit was the first because I didn't know what to expect, but after that it was okay.

Best of luck to you.   

BlessedinPNW
Posts: 14
Joined: Oct 2013

Thanks for your reply.  Nausea, fatigue and 'pink skin' is what she mentioned I might experience at our meeting today.  She also said that the dosage is very low for DLBCL compared to other cancers.  She wants me to have 15 treatments total.  Sounds like you had a rough time of it.  I hope the damage wasn't permanent.  Was this a error on their part or just a consequence of the area that they were treating? 

bobmcghee's picture
bobmcghee
Posts: 43
Joined: Apr 2010

You asked 'I hope the damage wasn't permanent.  Was this a error on their part or just a consequence of the area that they were treating? '  Just in case I wrote it wrong.. The radiation didn't damage the vertabrae, that was the lymphoma.  After radiation and before chemo they did a vertebroplasty where they make two small holes in your back and put a cement in the bone to make it strong. It's done as an outpatient.

Shoopy
Posts: 210
Joined: Jul 2013

I can't really comment on your question but I have a question of my own.  I was Dx with DLBCL in May 2013.  Luckily for me, the only locations that had cancer were my lymph nodes...so technically I had no cancerous mass.  I went through 2 cycles of RCHOP, 3 cycles of RDHAC, and just finished 2 cycles of RICE...stem cell transplant within the next month (because my DLBCL is a bit "chemo resistant").  They have never mentioned radiation for me.

Do you have a mass?

I wish you the best of luck and would love to hear how things go.  You are correct...this group is fantastic!

Karl

BlessedinPNW
Posts: 14
Joined: Oct 2013

Yes, I had a large abdominal mass with 5-6 smaller ones adjoining.  Bone marrow involvement as well, which I understand is why they staged it at lV.  You and I sound like we are on the same timeline.  I was dx'd in May as well.  They didn't mention a stem cell transplant to me.  how did they know you were resistant to chemo?  Did your doctor do a mid treatment scan?  Mine did not do one until i was finished w/chemo.  I had tumor lysis after round 2 of rchop... I guess he felt pretty confident it was working. Lol.  

Shoopy
Posts: 210
Joined: Jul 2013

Thanks for answering so quickly.  I started RCHOP on June 5th.  After second treatment, my oconologist wasn't happy with the size of my spleen (@ Dx was almost the size of a lung).  He could still palpatate it with his fingers so he ordered a PET scan.  Waiting for the PET scan the nodes in my neck, groin, and armpits swelled.  At that time, I switched over to Roswell Park Cancer Institute (about 20 min from my house).  The plan was for 3 rounds of RDHAC then stem cell transplant.  The conducted PET scan after round 2 and 3 and the doctor noticed an uptick in cancer activity.  That was the first time I heard him tell me "it seems to be chemo resistant".  So by switching me to RICE (2 rounds now complete), they are hoping to catch it off guard..."give it something it hasn't seen"...and drive it down further.  I have PET and CT scans next week to see if I'm ready for the stem cell transplant.

If my original oncologist wasn't suspicious of the spleen, I wouldn't have had a PET until I was done with RCHOP.

I don't have a mass anywhere nor was my bone marrow involved.  I think that's why he hasn't mentioned radiation to me.

Karl

Rocquie's picture
Rocquie
Posts: 478
Joined: Mar 2013

Hello Toni and welcome to the group. Congratulations on your completion of R-CHOP. I had R-CHOP 8 times. Afterwards, my Hematologist/Oncologist discussed 3 additional treatment options. One was radiation and one I honestly don't remember. The third option was Rituxan Maintenance. I asked him point blank what he recommended, he said Rituxan and I was comfortable with that. 

I sense that you have doubts about radiation therapy. My suggestion would be for you to talk to the radiation oncologist, get their opinion. If you still have doubts, ask for a consultation with another Hematologist/Oncologist.

Good luck making your decision. You will be supported here, no matter what your decision is, so let us know, OK?

Best,

Rocquie

 

 

 

BlessedinPNW
Posts: 14
Joined: Oct 2013

Strange how many different forms of treatment there are for basically the same disease isn't it?   I feel a little better about the radiation after our meeting today...really low dose and only 3 weeks instead of the 5-6 weeks that I was told to expect.  Still (now I'm going to give away my age here) I remember being 6 or 7 when we had 'bomb' drills at school where they made us cover our heads and hide under our desks. Like that was going to save us from nuclear fallout. Lol. So told the onc. radiologist that I'd like to think about it over the weekend and let them know my decision on Monday.  Re: the support...so wish I had found this group when I was first diagnosed.  I had so many questions! Thanks so much for all your support.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1039
Joined: May 2012

As was mentioned to you, have a candid discussion with the radiation oncologist.  Vent your concerns.  If radiation rountinely "caused cancer," I don't suppose there would be too many radiation oncologists in business !  I have read reports that suggest that chemo, when comboined with radiation, can sometimes increase long-term risks of later cancers, such as leukemia, but there is no way those studies could know if not having the radiation would have left the patient dead with the initial cancer recurring.  These studies have to be set in context.   The fact that your oncologists recommends the radiation would speak volumes to me.   If Rituxan maintenance is an alternative, however, I would go that route, since Rituxan, to my knowledge, never causes secondary cancers.

I know that it is complex and agonizing. I hope your meeting brings some confidence and peace.

max

BlessedinPNW
Posts: 14
Joined: Oct 2013

All very good points that I hadn't considered, thanks Max.  I do trust my oncologist..he's done a grat job so far so I guess this is no time to doubt his judgement now.  Didn't think to even ask him if rituxin was an option...in fact he didn't even mention any alternative treatments.  That said, I feel much more informed about radiation treatment after my meeting w/the on radiologist today.  You've got me thinking though...think I'll call my oncologist tomorrow and ask if there are alternatives.  Thanks so much.

scndshot
Posts: 5
Joined: Jul 2013

Hi Toni,

Can I ask where they want to radiate?  Following 6 rounds of R-Chop, I had 18 days of radiation to the mandible.  This was this past Jan.  Going through the radiation was no big deal but the side effects because the radiation was basically to my head/mouth have been pretty severe to this day.  Burns, Dry mouth, loss of taste, cavities, gum issues...I don't regret it because it was one more weapon to kill the cancer.  Just be aware that you most likely will have some side effects but if it takes care of the cancer, then it is most likely worth it.

BlessedinPNW
Posts: 14
Joined: Oct 2013

Sure..my abdomen.  Pretty large mass with secondary involvement in the bone marrow. Think I would definitely have second thoughts it my head was involved.  Max got me to thinking when he asked if they offered alternative treatments...my oncologists did not.  Did yours?

girliefighter's picture
girliefighter
Posts: 206
Joined: Mar 2013

Do you want to know from people who have had radiation? or do you want to know what we would personally chose if we were in this situation

Carie

BlessedinPNW
Posts: 14
Joined: Oct 2013

Both actually... Feeling more informed after our meeting today and a little less anxious about it, but am taking through the weekend to decide.  Any input you can provide would be greatly appreciated.  I can use all the help I can get!   Toni

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